Frightened

This is my first post although first diagnosed with breast cancer 12 years ago. I was informed yesterday that i have not got secondary breast cancer in the lungs. I am so frightened of what the future holds as treatment has not yet been confirmed until i have had a CT scan to see if the cancer has spread anywhere else.

Hi 5n0wdrop
Did you mean now instead of not! If so, sorry to hear of your awful news!

I can understand that you are feeling distressed and many on here can identify with that feeling! Waiting for the CT will be difficult and frustrating, as you feel helpless until treatment starts! I don’t have secondaries in my lungs (I think!.. but after the last CT scan, which I didn’t see! the oncologist mentioned that the chemo was working and had shrunk the lung and liver mets- I did have lymph nodes in the lungs affected perhaps he meant them! but I have secondaries in so many places perhaps he DID mean lungs!)

I know of many people on here, who been living with lung secondaries for some years, hopefully they will soon come along and give you some inspirational stories! Secondaries aren’t a imminent death sentence! they are now treated more like a chronic illness, they rarely (but they can)go, but can be managed for many years! Many on here will testify to that! I tell people I am ‘living with secondary cancer’ - at first I thought of myself as ‘dying of cancer’ but support, information and inspirational stories on here have turned my thinking around and I stay positive (mostly, but nobody will deny that we all have down days, but these are far outweighed with great days)

You are at a very difficult stage, waiting and worrying, but once you know for sure and get a revised treatment plan in place, you should feel in more control and more positive! Last week I was diagnosed with brain mets, I had a hysterical sobbing day, but now my treatment has started I have been able to convince myself I will beat this latest crap!

Good luck to you, sending you all my best wishes that it is only the lungs…even if it isn’t there are many of us who carry on as normal without any debilitating side effects for quite a few years…I still worked until last week’s diagnosis and hope to return in January.

Take care and try to stay strong xx

Dear 5n0wdr0p

I am sorry to read about your recent diagnosis, welcome to the BCC forums where I am sure you will continue to find plenty of support and understanding of what you are going through right now. If you feel it would help please call our helpliners, they are here to offer you further support, information and a listening ear on 0808 800 6000, the lines are open Mon-Fri 9-5 and Sat 9-2.

If you want any further information about secondaries to the lungs you can read more here on our information page, you will also find other support services which you may wish to access at some point:

breastcancercare.org.uk/secondaries

Take care
Lucy

Hi nicky65 was just reading your post and was wondering if you can explaine for me the diffrence between lung mets and lung nodes xx josie

hi Josie

I was told that the nodes in my lungs (I think they are lymph nodes)were swollen and looked to have cancer in them! The consultant said that was not too bad information, as it looked as if the nodes were doing their job and ‘mopping up cancer’ before it established in the lungs - I think that’s what he said, had had bad results so was a bit traumatised!

Do correct me someone if this is wrong :0)

5n0wdrop

Just wanted to echo Nicky’s comments and say that I know how terrifying this is.

Do you know when you will be having a scan? Waiting is the worst thing.

Whatever the results, it is not an immediate death sentence which I thought back in June when I was diagnosed with mets to liver, lung and spine. There are many women on this forum living well with a secondary diagnosis. I hope you will come back and let us know how things go.

In the meantime, keep away from Googling statistics which can be out of date and scary. Stick to reputable sites like this one and MacMillan.

Just shout if you need help, advice, support or a bit of a rant.

Laurie x

HI nicky65 would like to say thanks for replying to me also would like to just say how very very strong you seem with everything your going through , life can be so b—dy harsh sometimes .
I to have had bilatral mastectomy with 3 out of 9 nodes involved was then told had secondarys lung mets .
After 10 days was called back to say it might not be on lung so am realy up in the air right now as just had groshung line fitted and having 6xfec and after 3x they will re-scan me so not realy thinking of xmas as the scan comes creeping in my mind , sorry but its so hard when no one understands and everyone just says one day at a time xx josie1

Hi 5nOwdrOp,
So sorry to read your post. Yes, it is very frightening, especially when you have to wait for further tests. I understand your fears & worries, as I was also diagnosed yesterday. Although trying to remain positive about things, I understand fully that it is extremely difficult whilst waiting for a treatment plan. I was diagnosed with BC & had full radical mastectomy in Jan 2005,which had spread to all lymph nodes in armpit. 8/9 months of chemo & 6 weeks daily radiotherapy, with ongoing Arimidex, kept me going but the intense treatment left me with osteoarthritis, osteoporosis & now, pulmonary lung disease…but I was still getting around & enjoying life! This latest news is devastating. I was in hospital in July this year & after tests, endoscopies, CT’s etc the result is diagnosis of stomach cancer, secondary breast cancer, which I believe is relatively “rare”, but possibly spread to my spine too, although this is not confirmed yet. Like you, I am in limbo until I see the consultant from Christie’s.Please try to keep your chin up as much as you can, and remember that ‘positive endomorphs’ are believed to be beneficial towards beating this nasty disease. My way of dealing with this is to try to “carry on” as normal,difficult of course, but everyone deals with it in their own way. Take care. xx Chrissie. :slight_smile:

Hello 5nOwdrOp,

If you did mean you have been dx with secondary bc on the lungs, then I can sypathise with you as I was dx with primary and secondarys from the get go back in march this year. I was just like you are frightened, thinking the worst, but as time has gone on and with my treatment plan, things are ok, never thought I would say that, but they are ok, I don’t feel any symptoms, I’ve done chemo/mx with lymph node clearance 1/13 nodes infected and now about to start rads for 3 weeks, on herceptin/tamoxifen indefinately.

The chemo worked wonders and shrunk everything including the mets on the lungs, now they are classed as tiny and the onc says they are unchanged since ct scan in june and so I take that too mean I am now stable. You can live with this and you can beat it, thats what I say, its early days for you but you will come round and be ok with this especially once you start your treatment plan you will feel much much better. Its working for me and it will work for you too, if you want to pm me please do. Please remember secondary BC on the lungs is exactly that and is not lung cancer. There are dedicated threads for lung mets where you will find a lot of ladies all very encouraging and helpful who will give support and advice.

Sending you lots of love and light
cyberhugs to you
Sarahlousie xxx

Thank you for all the lovely messages regarding my post. It is good to be able to hear from ladies who are going through the same emotions/situation as me.

I found out today that I will be having a full CT body scan on 9 December and i hope that i get the results before Christmas so that my treatment plan can start, but hopefully no chemo this time as my body couldn’t take it the first time i was diagnosed back in 2000.

Lisa (aka 5n0wdr0p) xx

Hello 5n0wdr0p

Hope you have got some comfort from all the replies on this thread. I certainly have and it gives me great hope to see all the ladies that are surviving many years after diagnoses. It is terifying but the treatment plans do work, I have had two lots of radio to the bone mets in my spine and am now pain free.
Keep positive and as advised, don’t look at statistics and good luck with the CT sacn.
Thinkong of you
Rosie (Trash) x x